“How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are” I John 3:1

Meditating on the Father’s great love for us, this picture comes to mind. A.J. missed his Daddy so much while he was away for a week serving in Mexico, that he ran quickly into his arms as soon as he saw his Dad return. “Daddy! Daddy!” I was able to click my cell phone camera in time, because the strong embrace lasted so long. How great is the love of this father and son.

I have been a little wound-up lately. My heart is racing as though I have consumed a tank of caffeine. It has been a difficult “Special Needs Month” as we deal with battles and situations beyond our control. The aching in my heart pulls me to crawl under the covers and sink into my sadness. But the Lord keeps giving me this picture of my child running into the arms of his father.

Is that the kind of love You have for me, Lord? Is that the kind of love You have for my child?

I choose not to hide under my covers in despair. Instead, the love of the Father draws me to His embrace with these comforting words from Psalm 121:

“I look up to the mountains—
does my help come from there?My help comes from the Lord,
who made heaven and earth!

He will not let you stumble;
the one who watches over you will not slumber” NLT

It isn’t easy being vulnerable, but I have finally learned to allow the body of Christ to bear with me in my burdens. I am entrusting my special requests to trustworthy friends who pray on our behalf.

This is when I cry, when I let the walls of self-preservation drop and allow others to come along side us. Augh, this isn’t fun.

You can count on one hand the amount of times I take my kids out of school for reasons other than illness. Today it may appear I had no good reason to take Cade out of school.

His older brother, Anker, had a doctor appointment with the Pediatric Cardiologist. Anker doesn’t often do well at doctor appointments. He equates doctors with poking, prodding, and the need to fight for his life. Growing anxiety is the way he prepares for the doctor. The last time we visited Dr. Van Gundy, Anker was too anxious to sit on the doctor’s table. So, the 6-foot something doctor bent his knees as he sat on the bare floor and invited Anker to lay down beside him. Anker responded to this gentle giant, and lay on the floor, allowing the doctor to examine his heart.

I was touched by a doctor who understood our son’s increasing anxiety. Try as he may, Anker could not utilize the resources to successfully express his fear. Dr. Van Gundy communicated compassion to our son, while offering us a great sense of relief. After all, it is no easy task taking a growing boy to intrusive doctor appointments…we have the bruises and bite marks to prove it.

There are two things about Cade which prompted me to take him along to this appointment. Cade adores his older brother. In the fifteen years of his young life, he has loved his special needs brother with a depth of understanding and strength which blows any observant onlooker away. He gently guides Anker to try the things the O.T. or speech therapist, or optometrist request Anker to do. He models the task, and playfully and patiently invites Anker to follow his lead. Down Syndrome individuals respond well to peer role models, and with gratitude, we have a wonderful role model sharing life beside his brother. Anker felt relief today, with his brother beside him.

We have experienced many doctors in our special needs journey: doctors who have little sense of compassion, those who lack understanding of our child’s specific needs, and those who are absolutely outstanding. These outstanding doctors are the ones who speak with compassion as they offer respect and care to our child. They are acutely aware of the specific special physical needs of our child, and are the very doctors we remain faithful to. Since Cade desires to be a doctor himself, we find great value in exposing him to the characteristics of these outstanding doctors. I knew Cade would offer support to his brother, while gaining an education himself.

Cade sat closely as the nurse examined his brother. Anker began to shout with anxiety, and Cade talked gently to his brother. Anker calmed down. Dr. Van Gundy entered the room and carried on a conversation with Anker, “You are growing whiskers, aren’t you, Anker?” He took time to visit with our boy. He took time to ask questions, and he gently examined Anker while sitting beside him, this time on the examination table.

Heart problems are prevalent in individuals with Down Syndrome. Many are born with heart defects and require heart surgery. This is one statistic we have not had to bear. But, Anker does have a murmur, which we must continue to watch closely. Dr. Van Gundy referred us to a Pulmonary Specialist to rule out sleep apnea issues, and blood tests to check for Leukemia, Diabetes, and thyroid–all medical issues which have a higher occurrence rate in individuals with Down Syndrome.

So, we take the yearly tests, and we continue on with life. We stop for a special milkshake topped with whipped cream and a cherry, then head back to school. Anker asks to stay home with me–feeling a little too stressed to return to his afternoon classes. Cade returns to his texts and tests; having gained a little more knowledge from experiencing a life lesson on character with his brother and an extra-ordinary doctor.

I used to consider raising our child with special needs emotionally and physically manageable. But the “easier” early years slowly turned into years that felt like we were living in the wilderness. In spite of the love and frequent happiness we had with our boy, there came very difficult moments which turned into weeks, months, years. Behaviors and sickness developed in him; exhausting our every resource and emotional reservoir.

Attending school IEP meetings are a necessity for a parent who has a child with any kind of special need. Anker and I approach the meetings with much prayer cover, and walk away from them feeling a little successful and a little beaten down. A good portion in the history of our annual meetings include experiences of anxiety, school politics, frustration, and the inner pressure to keep our cool. I have often thought we should create, “I survived our child’s IEP meeting” t-shirts.

Today’s meeting was different. Within the opening minutes I had already burst into tears. I held A.J.’s 11th grade school picture up to the IEP team; his eyes crinkled from his huge smile. His teachers and therapists around the table swooned at his handsome happy image. This is how they perceive him every day at school.

“He is so happy, polite, and a leader. None of the previous behavior concerns have been an issue for months. We want to develop him as a teacher assistant: making copies, picking up and delivering mail, greeting office staff,” Miss June told the IEP team.

More encouraging words were announced as we were told his long-term substitute teacher has officially been offered the teaching position. June is a dynamic teacher. She is a rare gem in a pool of special education teachers. She instinctively understands our kids, expects great things from the students every day, and gets tremendous growth from them in return.

Through a series of bumps, politics, and teacher turn-over, our kids have suffered from the lack of consistent quality teaching. When our kids suffer at school, boy do we suffer at home! So, we have been praying specifically for June. Last year when she was released from the substitute position, we continued to pray the Lord would make a way for her in the classroom. Our special kids deserve such a gem in their lives.

We wrote letters to school officials, put her on our prayer lists, and we waited…waited…waited. At the moment I heard the words, “The position is June’s if she will accept it”, my tears flowed without warning. My lips quivered as I attempted to express our joy. One of the educational officials, always professional in her demeanor, fought back her own tears as she listened to our gratitude. “What a testimony,” the speech therapist added.

I was surprised a bit by the instant flow of tears on display. Deep within my spirit, I was praising and bowing to the Lord. The tears continue to drop as I reflect upon today’s meeting. In my absolute trust of the Lord, I knew I could ask Him specifically for a request, and trust that He could provide. At the same time, He gave me faith that all would be well. All would be well, even if A.J. had to experience another change of teachers. But I would keep on knocking on God’s door; asking specifically for June.

Now God, in His perfect way, has provided a beautiful gift for us. We have one less obstacle to maneuver and one less change to endure. He knows what is best for us and He knows when we need a break! Thank you, Jesus, for providing our family relief!

I mentioned earlier that raising our boy with special needs used to be somewhat easy, and then it became difficult… very difficult. As I reflect on the growth of our boy over the last two years, I can now say we are living with a new “easy.” God has made a roadway in our wilderness. He does provide rivers in our dessert.

This new place of living is where we have gained new coping tools, and effective behavior management. We have found contentment in our unexpected lifestyle. This is a refreshing place.

“Do not call to mind the former things, or ponder things of the past. Behold, I will do something new, now it will spring forth;
Will you not be aware of it? I will even make a roadway in the wilderness, rivers in the dessert” Isaiah 43:18-19

“Yes, boat”, our oldest boy said with a huge grin. His eyes scanned each of ours as he awaited our response.

A glimmer of hope rose up in me, “Do you want to go on the boat this morning?”

“Yes, boat”, he said a second time. It was our third day of summer vacation, and our boy with special needs was beginning to drop his guard. He was slowly adjusting to the change in environment and opening himself up to fun activities.

We barely finished breakfast, but we all intuitively knew to take advantage of the situation. No one bothered to put on their bathing suits or sandals, instead we scurried off to the boat house. This time we avoided the creaky wooden dock and the rowboat which rocked so much it shook his footing. I stopped to pick up paddles and life jackets while the boys walked straight to the kayaks—the red ones, because red is AJ’s favorite color. It made him equally happy to adorn the red life jacket.

AJ cautiously walked through the muddy path, weaving in between the other boats, then awkwardly swung his leg into the kayak. Dad held the boat steady while brother helped AJ sit down. The kayak was a good choice. He was able to sit securely on stable land while his Dad gently slipped the kayak into the lake.

The rest of us stood on paddle boards and glided alongside the kayak. He was not protesting with the anxiety he displayed yesterday. Quietly grunting to express his discomfort, he suddenly changed his tune. “Yea!” he yelled and then applauded his own accomplishment. I dug my paddle through the water as my toes dug into the board. Our other two boys stood beside me gliding through the lake on their own boards.

My youngest boy teased me and reached his paddle out to nudge my board. My feet changed positions to regain balance, but down I went. I crashed into the water with my skirt flowing up around me. Thankfully, most of the campers were still eating breakfast and there were no other boaters on the lake. With little grace, I crawled and slipped my way back on the board. What a great morning. We floated and laughed and enjoyed each other for a couple of hours.

This is a rare occasion. Do you know how often some of us special needs families are able to enjoy adventures together? Often times either my husband or I hang out in the hotel room watching Lion King with AJ while the other parent takes the siblings out for fun. What a gift we experienced this morning; two parents together with all of our children enjoying the lake.

Carefree in the kayak

We pulled our boards and the red kayak ashore after a great morning of water fun. The boys stripped off their life jackets when AJ requested, “more boat ride”. So, out went he and his brother on a second adventure. This time he was done after 10 minutes, but he was able to build one success upon a previous success. The praise and the high fives and the gummy bears were flourished upon our boy for the happy choices he made.

The family was encouraged with progress while the heart gives credit and gratitude to our Lord. Thank you Jesus, for a carefree spirit in our boy today. Please give us more.

Slumped on the picnic bench, I sit disappointed as I listen to our son say, “No” for the umpteenth time. It is the end of summer break and we are on our one and only family vacation. Our oldest son, who has special needs, is filled with stress and anxiety this morning. “No” is the limited word choice he uses to express his discomfort.

We apply our behavior plan, but the negative behavior looms. The rest of the family continues discussing the day’s plans as we sit around the picnic table. My mind wanders away from the conversation, wondering if there are other tools we could use to coax our boy along. Sinking my chin into the palm of my hand, I watch him as he eats and I begin to pray, “Jesus, please help him be carefree”.

We couldn’t have picked a more relaxing, stress-free vacation place. Regardless of the calm lake and lazy schedule, our boy was stressing over straws for his cup, climbing into a rowboat or walking up a small row of stairs. The anxious behaviors interfere with his ability to enjoy new experiences and relationships.

Our family of five responds to his needs like second nature. We take paths of least resistance; avoiding stairs and carrying straws in our bag. We plan to ignore negative responses; trusting the lack of attention will deflate some behaviors. And we carry a “tool box” of high fives, praise and gummy bears for his great behavior choices.

Brother encourages brother on the stairs

We have come to expect new situations will often create anxiety in our son. A new place to sleep, a change in schedule, and crowds of people can throw off a normally delightful child. This is the life of a special needs family. There are times we respond to his behavior with our own erupting stress. More often we take deep breaths and dig deep inside ourselves to persevere and love and laugh, and sometimes cry, (speaking of myself).

Most of all, I pray. Try as I may to be equipped with effective survival tools to empower my family, ultimately I have very little control. I release our boy to One who loves deeper. As everyone finishes their breakfast I silently pray, “Lord thank you for giving us tools. Thank you for giving me a kind husband and compassionate sons. But, I pray for a carefree heart in our boy. He can’t pray it for himself. I pray You’d work your Spirit within our boy…to relieve him of his anxieties…give him joy and rest. Only Your Spirit can do that, Lord. Do a mighty work.”

I’m going to pray this prayer relentlessly.

Take a look at Pt 2 of our summer vacation: A New Day: Our special needs summer vacation

Hi! I’m Bonnie

Culture beckons us to follow in its folly, but Jesus desires that we follow Him. Grow along with me as we discover how to hear and obey the voice of God in our child rearing, thought life, womanhood, work and ministry. [Read More …]

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You can count on one hand the amount of times I take my kids out of school for reasons other than illness. Today it may appear I had no good reason to take Cade out of school. His older brother, Anker, had a doctor appointment with the Pediatric Cardiologist. Anker doesn’t often do well at […]

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I used to consider raising our child with special needs emotionally and physically manageable. But the “easier” early years slowly turned into years that felt like we were living in the wilderness. In spite of the love and frequent happiness we had with our boy, there came very difficult moments which turned into weeks, months, […]